Woman recalls ordeal with Lyme Disease, with misdiagnosis a problem
Princeton Area Library head librarian Robin Suhsen emerged in late October this year from a painful experience with Lyme disease, and she and her husband Scott said it was made worse by early misdiagnosis.
Robin, 53, noticed an irritating rash on her back in early June and went to Fairview Northland’s express clinic at Coborn’s at mid month to check it out. It was the beginning of an ordeal that lasted through the summer into fall.
If pain is measured on a scale of 1 to 10, Robin said during an interview this month, the pain she felt in the first three weeks of July was a 10. Robin equated it with the pain of giving natural birth.
Scott, who is employed at Crystal Cabinet Works and is known for his work on the city’s park and recreation board, chronicled his wife’s Lyme disease experience as part of a letter he plans to send to Fairview. “I’m not a headhunter,” he said, explaining that he is only questioning the process that led to medical personnel not figuring out earlier that Robin had Lyme disease.
“We basically gave up most of our summer while she battled with Lyme disease and maybe that didn’t have to happen,” he says.
Robin said that when she was seen by the nurse practitioner at the express care clinic in June, a possible insect bite was discussed. But the nurse practitioner dismissed that and prescribed an antibiotic for an infection, Robin said.
Not long after, when Robin was attending a conference in Salt Lake City, she began experiencing a tingling in her arms, and pain in her upper back. The pain increased to the point that she was unable to sleep much during her last two nights in Utah.
The following is a summary of the events from then on, according to what Scott has chronicled up to a couple weeks ago:
Robin was “miserable” during her plane ride home from the Salt Lake City conference on July 1 because of not being able to find a comfortable-enough sitting position.
Shortly after her return home, Robin went to the Fairview Northland emergency department in Princeton (ED) in the middle of night because of pain so bad she couldn’t sleep. Robin left the ED with a prescription for the pain medication, Vicodin, which Robin said had little or no effect on her pain. Robin continued getting insufficient sleep.
Robin’s followup with a doctor at Fairview Northland led to a doctor’s suspicion that Robin might have a herniated disc in her spine. Scott says that in defense of the doctor, that would fit with her health background of having had surgery in her youth to deal with scoliosis, an incorrect curvature of the spine. The doctor prescribed a stronger pain med called Percoset, and also Valium to help her sleep, and arranged for physical therapy.
Robin experienced constipation from taking those drugs and Scott says he wishes she had been prescribed a stool softener. She ended up receiving three enemas, plus an X-Ray, Scott said, Scott questioning if a suppository could have been prescribed instead to reduce the expense.
The physical therapy gave some relief but the pain was also moving down Robin’s body and the therapist was beginning to question if there was a herniated disc, according to Scott.
Robin returned on July 12 to the doctor she had just seen and he ordered blood and urine samples.
Results showed she had an elevated white cell count and her sodium level was extremely low. Not long after arriving home, she received a call that she should return right away to be admitted to the hospital.
Robin received various tests including a CT scan and ultrasound, was given a sodium IV drip and admitted.
Robin stayed in the hospital three days until her sodium level was acceptable. She had just enough pain relief during her stay, Scott says, for her to get a little sleep. Scott also remembers Robin’s symptoms after returning home from the hospital. She was feeling “restless at a minimum and often much worse, all the way to screaming from the pain,” he wrote.
Robin was also given an MRI and chest X-ray, which ruled out certain things such as a bulged disc.
While Robin was released from the hospital on July 15 without a diagnosis, events changed on July 17 when she visited a Dr. Gould in Elk River who had been her attending physician while she was in the hospital. He gave her a prescription for Lyme disease based on a screening.
Robin continued with physical therapy for two weeks and also continued taking Dr. Gould’s prescribed antibiotic until visiting a Dr. Larson who prescribed a different antibiotic because the other one was bothering her stomach.
Robin visited the emergency department again on July 21 because of not getting pain relief nor enough sleep. She was given Valium and morphine and juggled those with the intake of Ibuprofen and her prescribed antibiotic.
Scott and Robin note that the morphine cut her pain and the Valium helped her sleep, while more physical therapy helped her regain her strength. She received a refill of the morphine and Valium but was eventually weaned off both.
During a visit with Dr. Larson on July 23, she said, the doctor said that she should resume working half time at the library. But Robin found out that it was too early for that because when she tried, she did not have the strength.
Robin also saw a natrapathic doctor in St. Cloud who she said has experienced treating Lyme disease, and she also used holistic therapies such as the use of essential oils.
Earlier this month Robin reported that she still had some lingering numbness in her left leg. Robin says she is sure that she contracted Lyme disease from a deer tick. She also reported that the couple’s grown children – Chance and Tamara – suspected she might have Lyme disease, before she was tested.
Scott has formulated many questions from Robin’s Lyme disease experience, such as:
• If there is any possibility of someone having Lyme disease, could an antibiotic be prescribed for that, alongside another antibiotic being taken?
• Should a patient also receive a probiotic with an antibiotic, especially when the antibiotic is strong or is prescribed for a along time?
• Would not a prescription for a counter measure for constipation be better than just a recommendation?
• Are there alternatives to enemas to deal with constipation?
• Could not Lyme Disease tests be done earlier than they are sometimes done when no solution is coming forth for the symptoms, especially for this area where deer ticks are prevalent?
• Could there have been more follow up on her tests?
• Could the My Chart information that the patient sees also include information on emergency visits to the hospital, physical therapy sessions and prescription history.
Robin adds that she understands an increasing number of people have been found to have Lyme disease.
Robin and Scott said they hope that by bringing out her experiences and by raising questions, they might save someone else from going through the extent of pain and difficulties Robin had.
Scott notes that shortly after Robin received her Lyme disease diagnosis, a co-worker of his was telling him about his wife’s illness and the tests she was scheduled to have. Scott says he suggested she get tested for Lyme disease first. She then did, and the Lyme disease was confirmed. “Because of the earlier diagnosis, she was able to recover more quickly than what we experienced,” Scott said.
“I don’t blame him (the nurse practitioner who first saw Robin) for the diagnosis,” Scott said this week. “I question the whole process that if there is the possibility of Lyme disease,” that the patient receive a Lyme disease antibiotic rather than a more general one.
Scott said he is challenging the thinking about the process that his wife experienced considering that there is so much Lyme disease in the region including Minnesota, Wisconsin and Michigan.